Author: Jen Rios

Yesterday was my invasive appointment downtown and I didn’t understand what was going on while I was going on until today.

Making my way through a busy hospital is difficult given my failing eyesight. I told my Mom when we leave for places in public, I am just looking at her. I am just following her. I can’t focus on all the people around me anymore.

She wears a shirt with a color that Ithat I can see so it’s easier for me to follow her. With the renovations that I’ve taken place at Henry Ford hospital downtown, Things have changed in the past thirty years, but our references still go back to my Dad.

Yesterday, before we left the house, she told me that we were going to go in, “Daddy’s entrance.” She meant the West entrance. That used to be the entrance to the Cardiac floor. We have spent years there!!! But now, it’s a straight shot and it’s easier for me when my Mom drops me off there and parks the car.

I didn’t understand why I was so nostalgic yesterday, but I was! My Mom came in and she was wearing a butter yellow shirt, so I knew what I was looking at. I followed her to the main elevators to go up to the ninth floor for Urology.

Just as I got in to the waiting area, I was going to wait for her to come in after parking in the car, I heard the lullaby so a baby had just been born and I think that’s beautiful! I always think about Sean when we go through the hallway from the West entrance to the main hospital because I remember when the tile was unfinished for the duration that he was in the hospital. I think there was some kind of labor dispute with the contractor.

It’s all finished now so I changed my thoughts to going down that hall when we were waiting for news about my Dad. I think that it was it the chapel when I began to cry. I remember my Mom going there to pray for my Dad.

I still wear a face mask in the hospital because there are sick people there and I am very vulnerable so the tears just started coming down and I didn’t try to stop them. We got to the main elevators and I got in and so did a bunch of other people so Mom just punched in everybody’s floor as I sat in the back corner and the tears continued.

It wasn’t until we got into the Urology clinic where my eyes started getting super blurry as I was crying, and I ran into chairs on my right side. My right side is my ‘poop side’ anyway. After my Mom checked me in, I asked for a tissue and a new mask because I blew my nose and my mask was wet.

I was going to be called back soon for my appointment so I stopped thinking about my Dad. The appointment was just as invasive as I remember it being We had a great tech working with us, Shayna. I don’t need to see Dr. K for another year, so that’s kind of exciting. Shayna told us that she will see us next year, but then she told us that she won’t forget us because we laughed a lot!!!

But it’s not until now that I understand why I was so nostalgic. It’s August. Yesterday was nine days until it’s 20 years that my Dad has been gone. It can still feel like yesterday and that’s how it felt yesterday. Tears can come so easily and they did yesterday.

I get a haircut next week Wednesday, but I’m done until September 16 for a haircut and September 22 for my six month check up with my internist. I get weighed then.

I am positive that this will not be the last tears leaning up to 20 years. I really can’t believe it’s been that long but sometimes it feels like it just happened.

I finished both of my appointments for yesterday and today. As usual, it was brutal! Absolutely brutal! But, I got through it.

I told my Mom on Sunday or Monday that it is absolutely brutal looking through that view finder, and seeing nothing when I know for certain that there are letters there! I was talking to about my eye appointment that was coming up.

My eyes have been feeling wonky lately and dry because I need eye drops pretty much all of the time! Something was telling me that there is something going on with my eyes at the same time I’m hearing that damn doctor who told me 25 years ago that I’m going to blind and then I’m going to die after she told me that I had MS.

Well, Aaliyah, the tech who checked us in for my eye appointment Henry Ford Optimize had me do a bunch of things after I took my contacts out.

I couldn’t see anything! That’s probably because she started with my ‘right eye’ and that’s my ‘poop eye.’ When she switched over to my left, I still said, “Oh, there are the letters!” I couldn’t see them with my right eye.

I told Dr. Harris I needed a ‘bigger’ prescription. I don’t even know why I said it like that?! I have been a -7.5 for three years now and I told him that when I watched church, things are a little blurry. I now wear a -8 contact. I’m still going to finish my -7.5 contacts before I go to a -8. I need to call there and talk to the contact lens person.

I talked to Sean after my appointment and he asked how it went and she told him fine. Today, I told her it was NOT fine, anything but!!!

When we got home from the appointment, I passed out in my chair because it is kind of difficult seeing what I see now. I really can’t talk to anyone about that. That kind of stinks!, Or, a whole lot of stinkyness!

So, for my appointment today, Shayna was my tech and she was absolutely wonderful! When Dr. K came in, she looked into the scope and then told me that I will not need to see her for another year.

Hearing that excited me because I don’t need to see my neural Ophthalmologist until 2028, and now instead of having two appointments a year, I just need to see my Urologist once a year?!!!!!!!!!

Looks like I will be saving money next year!!!

The van is in my driveway my eye appointment with my optometrist tomorrow and my procedure on Wednesday with my urologist. I am not looking forward to either one of his appointments because I KNOW what I see and urology is a little bit invasive but it has to be done. #MSsucksTwentyFiveYearsAndCountingIn… 😒😒😒…

So, I pillaged today. I have had one full week with my new supplement and one week without the one that made me smell. I still do not know what I was detoxing, But one week without that supplement, I smell a little better.

I am still in a funk, but I have two doctor appointments next week. This is a whole lot and I haven’t even brought myself to write about what’s going on.

I think that it is the prolonged change of season going on right now. It started at the end of July and I’m pretty sure it’s going to last most of August. Nights are cold for me now, but the days are still super hot! I really don’t think my body can handle this!!!!!!!!!

I think that I will wear my hoodie and a winter hat when I go to my appointment on Wednesday. I am going to be downtown, in the hospital, for a prolonged period of time. I was freezing at Dr. Clark’s office so I don’t think this is going to be an enjoyable time for me at all!!!

I’m in a funk. I’m trying to deal with my disease progressing and that’s tough to say the least. I go to the eye doctor on Tuesday at which, I am not expecting good news and then on Wednesday, I have a procedure downtown that happens every six months now. Hopefully, she will tell me I can wait a year for my next one.

We had just finished our routine and I switchrd on the Hallmark Channel and I was halfway through Bridal Wave which that I can dig and have seen 1 million times. But then it happened. A line-up just for me!!!

A Country Wedding followed by Harvest Moon! Two of my favorite ABSOLUTE FAVORITE Hallmark movies!!! I had eye drops halfway through A Country Wedding and that sustained me through the end of Harvest Moon. I’m having a hard time accepting that my life is so small now… But it is…

I think that I updated my signature card in my Credit union last summer? I’m really glad that I did because I had to sign my mail-in ballot two days ago. I haven’t written anything at all in a couple of years, I think.

Control of my hand dexterity is pretty much nonexistent at this point. I squeeze my therapy putty every day for an entire rosary, which is usually 18 minutes except on Tuesdays and Fridays when I say the Sorrowful Mysteries, So then it is 20 minutes. I was face-to-face with that fact the other day when I had to sign my mail-in ballot.

After my Mom had filled out both of our ballots, she was filling out the outer sleeve. There’s a spot for my signature and her signature as the person who filled out my ballot goes. She handed the envelope to me on top of a box. I needed the bigger object to control my hands. Before I had her give me a pen, I told her that I should practice.

My signature consists of my initials for my first name. It’s just a squiggle and then I sign my last name. My last name is only four letters. I thought that it was easier to write a couple years ago. I think I wrote my complete signature about 20 or 30 times on the back of an envelope. Not one signature was the same.

I decided that my hands were starting to get tired and I just needed to sign. I did it, kind of, I think. My Mom told me that I should practice and that I will lose it if I did not. I just told her a flat out, “No.” I don’t need to write anything because it is difficult. I only sign my ballot every couple years.

I thought about the time that I was Linus in the school play, You’re a Good Man, Charlie Brown in high school. Back when I used to be able to sing. I think that I was a Junior?

I vaguely remember singing about fighting with big sister, Lucy. There was a line about something about my pencil, and I was given a large pencil as a prop. I held over my head as we were on the fake bleachers on stage because we were singing in a recital. I remember singing something about my pencil.

At this point, my loss of my writing ability has been years in the making. I remember when I was student teaching that he would tell my students that my writing is ‘obscenely large’ because it had started to get bigger as I began high school. I think that I coined that phrase in college, probably when MS was really beginning to set into my body.

I followed my matter of fact, ‘no,’ with the statement that ‘we should get a fatter pen’ because my fingers l hurt holding that normal sized pen. I have to sign my ballot because my Mom does not have power of attorney over me because at this point I can still think clearly. That a whole ‘nother bridge to cross if and when that happens. It’s going to happen. Maybe I should just stop voting when it does? That’s sad!

I voted. We voted.

I’ve been using mail-in ballots since before I knew that I was homebound, but I was homebound. My Mom dropped them off this morning. We completed our civic duty.

I feel that it all is a bit anti-climactic because I did not get a sticker AGAIN!!!